5.4 PART ONE: Phases of HIV and AIDS 124
5.5.1 Initial Psychological Anxieties after Diagnosis 135
5.5.1.1 Disclosure of Status 135
• HIV positive results
Disclosure of an HIV positive status requires much serious thought, van Dyk (2008) argues that the decision to disclose one’s HIV positive status is difficult because disclosure or non-disclosure may have major life-changing consequences.
In this section I will discuss the attempts made by the participants to disclose their HIV status, as by this time the participants have more or less accepted their status and are debating within themselves to disclose or not to disclose. The decision to disclose is difficult because the decision may have major consequences. The HIV-positive person has to carefully weigh the positive and negative aspects of disclosure, because disclosure is a very personal and individual decision.
While disclosure may be accompanied by easy access to medical services, care and support, it may also result in negative consequences such as isolation, rejection and stigma. When an HIV- positive status is disclosed to members of the family, it is a rather emotional time, marked by anxiety, fear, guilt and sorrow. The HIV positive person needs support from friends, support groups, counselors and religious leaders to guide him/her through this process and provide emotional and/or physical refuge. From the data it can be shown that disclosure to the family is at best a transition, and at worst, a crisis. Family members differ in their knowledge about the HI Virus, some fear contagion, such as was reported by Annaline about her sister not visiting her or
allowing her children to visit Annaline. Family members vary tremendously in the type and intensity of their emotional reactions; some are accepting, loving and positive. More often, there is shock, such as was expressed by Siwina’s father: “not you,” “not in our family.” Delene’s mother was angry: “How could you let this happen?” Ashwin was so ashamed: “what will other people think?” Thandiwe’s fear of family stigmatization led her to secrecy and isolation.
Disclosure creates some kind of change within the family, and life will never be the same again.
HIV-positive participants had to decide whether they were comfortable with disclosure, and if they decided to disclose, they had to decide whether disclosure was to be full (public disclosure) or partial disclosure (telling a few people such as parents, spouse, siblings and close friends).
Some of the participants in this study said that personal ethical issues also weighed heavily on them when they lied about their illnesses and their absenteeism. Annaline explained her persistent coughing and listlessness as recurring flu, and Delene said that her illness was due to leukemia.
This dishonesty, according to some of the participants, about their illness and absenteeism raised ethical dilemmas, which in turn brought on personal ethical consequences about self-worth and self-esteem, that questioned their standing in the school community and especially in front of young learners. On numerous occasions the participants in this study were caught in the midst of a tug-o-war between truth and lies. The decision not to disclose an HIV-positive status may also be viewed as an act of compassion and protection. Annaline, Delene and Siwina delayed disclosure to their parents because they feared the inability of their parents to handle the news, Thandiwe did not disclose her HIV status to anybody until just before her death (to her sister) because she wanted to protect her family from stigma and harm.
Disclosure of one’s HIV status is a very personal issue and it is also not a very easy decision, and may take the individual many days, weeks or months to take the bold step to disclose. Hays et al (1993) explain that the phenomenon of disclosure of one’s HIV seropositivity to immediate family members, colleagues and close friends is often perceived as a double-edged sword, because it could provide an opportunity for social support, but may lead to added stress because of stigma, discrimination and a break-up in relationships. They also said that the concealing of one’s HIV status may be stressful and can interfere with obtaining and adhering to potentially critical medical treatments. Hays et al (1993) also say that there is a direct relationship between
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the mental health status of an individual and the degree and comfort of disclosure of one’s seropositive status. Disclosure can be of various types and the decision to disclose can be influenced by a range of factors. Mason et al (1995) mention ethnicity as a demographic characteristic of an individual which has a great influence on disclosure. Ethnicity can be a sensitive issue. In Thandiwe’s case, she spoke of keeping her HIV status a secret because she feared for her and her family’s lives; although she was infected through a blood transfusion she suffered the same degree of stigma like other HIV-positive people.
Mansergh et al (1995) discuss symptomatology as a factor that has an influence on disclosure.
When the symptoms begin showing, then suspicion about a persons health also begin showing.
All the participants in this study agonized about disclosure fearing the worst. In Ashwin’s case he only disclosed to a counselor, because he was afraid that if he died in his flat nobody would know.
It can be suggested that the absence of a medicinal vaccine for HIV, has brought about a paradigm shift from symptom management to improving the overall quality of life. A person’s quality of life is a product of physical, social, emotional and environmental harmony. A good quality of life is important for effective coping with HIV, and disclosure is important for a person’s well-being, provided that those disclosed to respond in a positive manner. Hays et al (1993) believe that voluntary self-disclosure of one’s HIV status may contribute to improved psychological well-being. The support from those disclosed to has been associated with less depression and anxiety resulting in benefits of disclosure in the form of emotional support, financial assistance and care in illness. Data from this study show that Delene and Siwina were supported by their immediate families, whereas in cases of a necessity to disclosure to a spouse, the individual is not sure of the benefits of disclosure, and the chances of disclosure becoming a failure by increased discrimination and stigma are very high (as was the case with Ashwin, when his family disowned him). This in turn will result in increased anxiety and depression. Delene disclosed her status to her family four months after her diagnosis, after she became really ill:
I made the painful decision to tell my family. I should never have kept my HIV status a secret for so long because I re-lived all the agony that I initially experienced. My family was devastated
Delene received support from her family after their initial shock. Ashwin also disclosed to his family, because he could not keep his status a secret from them.
I had to tell my wife about this as soon as possible, I gathered up as much courage as possible and prayed that she will understand. When I told her that I was diagnosed HIV-positive, she hit the ceiling and asked me to get out of her life and the house
Ashwin’s decision to disclose his status did not work in his favour; he lost his family after his disclosure, moved out of his house and relocated to another area, then resigned from his post and sought a new teaching post in another city.
The very nature of an HIV diagnosis is rather traumatic, and the infected individual needed to come to terms with it, before the decision to disclose or not to disclose can be taken. Disclosure is a very personal and individual decision and its consequences need to be carefully thought through. The participants in this study expressed a great fear to disclose their status because they did not know how their families and friends would react to the news. According to van Dyk (2008), men and women experience fear of HIV for different reasons; women’s fears were based on powerlessness, loss of security and violence, men feared the loss of their sexuality and sex appeal to women and the lack of care when they became really sick. All five participants in this study decided not to disclose at school, because the corridor talk and staffroom experiences (according to the participants) made the school environment a cold, clinical and unfriendly place to disclose an HIV positive status (see Appendix 8). There are various reasons for non-disclosure and the participants shared their reasons.
Annaline:
I was so confused I just didn’t know what path to take; something told me that if I disclosed to anybody the bad news would get around so fast that I would be left hurt and abandoned
Ashwin forwarded his reason for not disclosing his status:
My colleagues, most of them are very insensitive and make hurtful comments, therefore, at school I keep very much to myself, because I feel that everybody knows my status. They still ridicule HIV-positive people, I feel very hurt about this
Delene explained that in her school the atmosphere was so unfriendly and she did not want to tell anyone about her HIV status:
I have not disclosed to anybody on the staff yet, some of them enquire about my health, whilst
Chapter Five Indrashnee Devi Appalsamy Analysis: On Analysing Participants Voices and Emotions
D.Ed Thesis: An insight into the experiences of educators living with HIV and AIDS in the context of
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some of them have made comments like, ‘oh shame you are too young to be so sickly’; this makes me feel very embarrassed
On speaking with Delene’s mother, I realized that she was very distraught and emotional about the HIV diagnosis initially. After some consoling, she spoke about the trauma and grief her family suffered for almost six months. She said that she was happy that Delene confided in the family, in this way the family was in a position to provide a safe comfortable environment for her. With Delene being in their midst they could monitor her health and also provide the moral support for her especially on “bad days”.
Siwina is of the opinion that while she enjoys a good relationship with her colleagues, an HIV disclosure may drive them away:
I have a good relationship with my colleagues and I do not want to spoil it by disclosing my status, I don’t know what I am going to do when the symptoms start showing.
Thandiwe was very afraid of disclosing her status and forwarded a reason:
I have not told any of my colleagues about my status, I cannot see myself disclosing to them; if word gets out that I am HIV-positive then my whole family will be destroyed, their house will be burnt to the ground
This fear for her family’s safety arose out of an HIV-positive person’s home being burnt to the ground in her neighbourhood. Having to go for an HIV blood test is daunting, and this experience was very traumatizing for all five of the participants in this study. All expressed great shock when given their HIV-positive results. Annaline described her shock:
He told me that I had tested positive and that Tim was HIV-negative. I just froze.
Ashwin followed routine after his hijacking ordeal, and went for a medical check and blood test.
He described his first moments of diagnosis:
I was told that I was HIV-positive. My HIV diagnosis came as a huge shock to me because the doctor did not ask my permission to do an HIV test.
HIV testing (according to Ashwin) is a sensitive issue, and permission has to be given by the individual concerned before this test is done. The results of this test are absolutely confidential, and the individual concerned has to be pre-test and post-test counseled. In Ashwin’s case, it was procedure that an HIV test be done, as he was physically and psychologically wounded.
However, he did not receive any pre- or post-test counseling. For Ashwin it seemed that his rights were violated again after the rape and he felt devastated, saying that:
“big men do cry”.
Both Siwina and Delene described their diagnosis as leaving them speechless. Thandiwe too, felt that going to get her test results was a very bad experience and she explained her feelings as follows:
I felt a rope tighten around my neck, like a death sentence was placed over my head
During this first phase of HIV (the primary HIV infection phase) none of the participants expected to be given an HIV-positive result. Once given their results, the participants voiced their extreme shock and disbelief; some in their despair went for a second test just to be sure.
5.5.1.2 Anxiety, Fear and Anger
• Anxiety and Fear
Discussions around HIV and AIDS is almost always accompanied by negative connotations, some of these being fear and anxiety. These feelings were expressed by Annaline:
I was also worried about tell-tale symptoms, I didn’t know how I was going to explain my illness when it came
Ashwin also experienced extreme fear and anxiety when he said:
I am now afraid to face my colleagues, just in case they see symptoms of HIV on me
Delene’s fear and anxiety stemmed from other factors in addition to her positive status;
anticipatory grief was evident in her emotions, as she lived alone and was really afraid. This came to light when she said:
I wanted a shoulder to cry on, I wanted to feel the comfort of the family home, I did not want to die alone
She was also very anxious as to what would happen to her in the later stages when she became really ill, and this fear and anxiety was revealed when she pondered about the future:
I will end up a cripple in a wheelchair; who will be pushing me around?
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Delene’s fear and anxiety was further highlighted when Brenda (her good friend) told her that she suspected her (Delene) to be HIV-positive all along. Delene explained that her concerns were not without reason:
That evening I cried, really cried, I was also frustrated because my secret may be out
Siwina and Thandiwe, like Delene, were of the opinion that an HIV diagnosis equals a death
sentence. Here too, anticipatory grief was evident. Siwina explained her fear when she said:
I was completely shattered. I knew that I was going to die
Thandiwe shared this fear and anxiety:
The terror of dying and grief that my life was over now and that I will soon die and the horror of what will become of my child and my parents hit me very hard
According to van Dyk (2008), chronic illnesses have often been associated with increased psychological anxiety, fear and distress, but an HIV-positive diagnosis places a huge depressing burden on the mental health of people affected with HIV and AIDS. Anxiety is a unique problem for HIV-positive people because of the distress that HIV creates in the lives of the infected.
Anxiety is a common problem for these individuals, and is one of the most prominent symptoms recognized by physicians among people with HIV. Kerrihard et al (1999) say that anxiety relates to several factors including HIV testing, number of symptoms, gender, overall adjustment to the HI Virus, higher pre-infection rates of psychiatric disorders, greater sources of severe stress, and socioeconomic issues. Kaplan et al (1997), Kerrihard et al (1999) and Perretta et al (1996) explain that, although anxiety and fear are predominant symptoms experienced by persons living with HIV, there is still very little information on management of HIV, the level of anxiety varies with the stage of HIV and the time since notification.
The participants in this study were particularly afraid and anxious because of their ignorance of HIV, how the virus was going to manifest itself, and whether they will be able to manage the infection as it progresses. All the participants viewed their HIV-positive diagnosis as a death sentence and expressed their fear of dying. Their HIV diagnosis changed their lives overnight.
Anxiety and fear, in many cases, arise out of ignorance about the consequences. In the case of HIV, the participants voiced their ignorance about HIV, and not knowing what to expect next or how to handle the virus. Participants also highlighted the fact that they did not have knowledge of self-care and feared the management of their well-being as the virus progressed. Thorne et al (2000) described self-care in health as all activities that individuals undertake with the intention of improving health, preventing infections, limiting the effects of illness, and restoring health after illness or injury.
Management of HIV and AIDS includes a change in lifestyle in order to lessen the impact of the virus and also to keep the immune system strong and healthy. In addition to medication it is this change in lifestyle that many HIV-positive individuals are anxious about. Stearns et al (2000) suggest that self-care practices used to manage symptoms or other effects of chronic illness are determined by a person’s decision-making ability, knowledge of available resources, and a capacity to use those resources, with the hope that these self-care practices and treatment will greatly enhance their quality of life.
• Anger
Another common emotion that comes into play is anger, and all five participants expressed anger at their HIV results. Ashwin expressed this as follows:
My moods changed from numbness to deep anger and then sorrow, and anger because the A in Aids is for acquired, I did not go out there and acquire this disease, it was thrust onto to me. I was a victim. Now I have to surrender and accept it
Siwina said:
My first reaction was one of anger… ‘are the doctors in a conspiracy to give mean HIV-positive result?’ At this stage I did not know whether he had time to counsel me, all he said was ‘Sorry, you are HIV-positive
Some HIV-positive people become very angry with themselves (as was noticed in this study), and this anger is often directed to those closest to them. Much of the anger stems from the fact that there is no cure for HIV and hence the uncertainty of the future. Anger is also directed at the people who infect innocent people and those who discriminate and stigmatise.